April 1st 2024

Hello Friends!

Happy April 1st

Another month starts today, this one is if April showers do come your way, they bring the flowers that bloom in May . . . 

Late to the party, the pink camellia is just now coming into full bloom and the red one just opening up!

I actually did some gardening yesterday, well not gardening proper but I trundled around my borders using my rollator/walker to keep me upright, and with a pruning shears in hand and a long handled pruner too, I did a teensy, tiny bit of tidying up.  I know I will never garden properly again and it does make me sad, but it was something out in nature and it felt oh! so good to have the sun on my face if only for a short while.  Hopefully there will be more to do in the coming days, it isn't much but it is better than nothing and, like I said, that feeling of warmth from the sun, after the horribly, long, cold and wet winter was just amazing.

I sprained my wrist and might have made it worse by pruning!  Yikes.  

Your responses to my last blog have been amazing.  Thank you all, and especially if you were able to sign and share the petition.  Every signature counts and matters!  There will be more coming on Parkinson's in the near future as I sift through everything.  As some of you said in your replies, we all of us know so little about it.  Education is a key word!

Until next time

Debbie

Into The Unknown With Parkinson's

Hello Friends!

It's been a while since I've been on Blogger.  I have decided to change tack and write about my Parkinson's journey {don't like using the word "journey" but it'll do for now} although it's more of a voyage into the unknown, like the Spanish Conquistadors and Christopher Columbus and all the other explorers who sallied forth into the great unknown.  Only they had a choice, I don't.

So, what is Parkinson's?  First things first. You may know it as Parkinson's Disease, but there is a move now to drop the word disease which gives the impression that it is contagious. It is not contagious, and it is now being known simply as Parkinson's.

Parkinson's is one of the fastest growing neurological conditions.  In the UK alone there are approximately 145,000 people diagnosed with this condition {around 83,000 men and 60,000 women between the ages of 50 to 89} and it is calculated that by the year 2050 there will be over 25 million cases worldwide.  It is more common amongst men than in women. It is progressive and debilitating, it robs you of being able to do the simplest of tasks, and there is no known cure, and it remains one of the most underfunded and under researched of medical conditions.  Try to imagine what it is like for your brain to be telling you to pick up that book but your arm and hand just will not comply and you hover above the book unable to grasp it.  Or when you are walking along, something that is automatic but all of a sudden your feet are rooted to the ground, your torso maintains momentum and over you go on your face.

It sneaks up on you and awareness of changes in your own body and discussing them with your GP it's about the only way of obtaining a diagnosis. There is no definitive test for Parkinson's, yet there are about forty different indications that can manifest years before the condition is suspected, never mind diagnosed.  Little things we might blow off as something else.

This is my story.

As many of you know I was a caregiver for my mother for several years. During this time, in 2015 I developed a frozen shoulder in my left arm. It was unexplained, I had no idea what was causing it, but because I was caring for my mother, I pushed my own medical needs aside to continue caring for her. Time passed and there was no ease to the frozen shoulder, but I pushed through the pain and mobility issues because I had to. Sometime in 2016 my left wrist started to hurt, and at that point I started to think perhaps I had a trapped nerve, or possibly arthritis. The pain was intermittent and became more of a minor inconvenience that I tolerated and ignored. Had I known that these two things were early symptoms of the onset of Parkinson's I would have probably gone to the doctor far earlier than I did. In 2017 the frozen shoulder finally started to ease but then I notice my little finger started twitching from time to time. Over the coming months the twitching started to spread until it was my whole hand from my wrist down. People were starting to notice, but still I refused to go to my doctor. My mother's condition deteriorated she went into hospital in early 2018 and from there she went into a care home. I was travelling for about eight hours a day, back and forth to visit and as a result didn't even give my tremors a second thought. She passed away in the autumn of that year and I focused on trying to rebuild my life by going back to work trying to pick up where I had left off 12 years earlier.  I had noticed I was getting slower, but I put that down to being older and less fit than I had been, and to my body's reaction to the cumulative stress of fourteen years of being a caregiver. I was incredibly tired and often found myself having to push hard to get through the day. It was winter and our bodies react differently, and I kept telling myself I'd get back on track properly after a winter of hibernation and self-care, then come the spring I would be able to start walking on a regular basis, regaining my former fitness. Of course, the next thing to happen before I had a chance to even think about putting myself back on track was the pandemic. We all know what that did for so many of us, no need to explain further that it knocked my intended recovery for six.  Of course, I know now there will be no recovery for it is incurable and progressive.

I muddled on, there was no improvement to my tremor but it wasn't getting any worse and I genuinely started to believe that it would heal itself eventually because nerve damage can take a while and there was no need to bother the doctor with something that would heal itself in the middle of the pandemic when appointments were conducted over the phone. However, in the summer of 2021, I noticed a tremor in my left leg. That was when I realised there was probably something that would require medical attention happening and I went to visit my GP. Everything was still very much about wearing your masks and keeping your distance, so off I went only to be told that he was very concerned and there was a high likelihood that I had Parkinson's.  He was thorough examining me and in questioning as any GP could do without being specifically qualified in neurological conditions. It seemed that so many things over the past four years or so were indicators. Sudden onset of an unexplained frozen shoulder being one of the major early indicators, even before tremors started to develop. The slowing down of movement and the increased tiredness, again both indicators. So I had evidence of four indicators and ignored them all through self-diagnosing. He sent a referral off to the local hospital and by the end of September I had been seen and officially diagnosed.

Since then, it's been like a roller coaster.  I will talk about my experiences over the coming weeks.  It won't be all about Parkinson's, there will be other stuff, but if you don't want to hang around, fair enough.  Thank you for being here this far.

In the meantime, please consider signing this petition to get better recognition, support and funding for research into this heinous condition.

Increase funding for people with Parkinson’s and implement the "Parky Charter" - Petitions

Until next time

Debbie xx

An Update

Hello Friends!

The situation has been a bit rough here lately and I've been on an extended social media break. Thank you to those of you who have noticed me by my absence, and especially those of you who have been in touch checking in on me. I am still here, but changes in my medication mean I'm not up to scratch at the moment.

I hope to be back reading your blogs and writing my own soon again. In the meantime, I don't know why I had this thought this morning, but it seems rather appropriate after seeing the news.

"Thinking if I was one of the astronauts stuck on the ISS looking down I'd just ask them to send up more food, toilet paper, and 6 new pairs of M&S knickers and say I'm staying up here."

Until next time

Debbie xx

Let Yourself Be Drawn . . .

Hello Friends

I came across this quote, one of many of the wise words of the great Persian poet, mystic, theologian and scholar, Rumi. 

“Let yourself be silently drawn by the stronger pull of what you truly love. It will not lead you astray.”

The love that pulls me is creativity.  I have passed through a crossroads.  I am now being silently drawn by the pull of a different aspect of that love.

I think I was born creative because by the time I was four years old I was already learning basic embroidery, knitting, and baking.  I would create in the evening as we sat around the fireside before bedtime, and I would come down in the morning to discover, to my delight, that the fairies had come in the night and put right my mistakes, picked up the dropped stitches and left little notes of encouragement! 

I used to help my Nanna in the garden, growing and creating new spaces and plants.  In turn, this creativity became growing food and creating delicious and nutritious meals to feed the family.

Now , not through choice, I'm turning away from the creative side of gardening and returning to the creative skills of my younger days.  

These days my creativity is keeping me sane in the madness of the world that spins in a web of deceit, lies, and tragedies of all kinds.  If I did not find solace in my creativity I don't know what would happen.

My latest foray into creativity is dabbling in junk journalling.  I'm not one hundred percent certain in the definition of junk journalling, it seems to be different things to different people, but here's what I'm getting up to with mine.  I started off with a blank spiral bound journal and now I'm basically decorating each page with ephemera, papers, fabric, stamps, images and more. You'll get the drift as the blogs go by.  Here is the cover.

First I did a mock up and took a photo when I was happy with the placements

then, once happy with the arrangement I glued it all in place

I used a mop up paper, ephemera including recycled Susan Branch calendars and some of a prize I won in a YouTube giveaway on Handmade by Shirley, stamps and die cuts.

I have already completed several pages which I will share in the coming days.  I think my blogs will be shorter from now on as I am getting very tired very quickly and must adjust accordingly.  Thank you for your support and understanding.

Until next time

Debbie xx

Hunkering Down Again

Hello Friends!

Well, here we go again, less than 36 hours after we see the tail end of Storm Eowyn, here comes Storm Herminia {named by the Spanish weather forecasters} I am sitting in my living room, in the silence that is broken by the wind that is already howling about the corners of my cottage.

No rest for us in the coming week, this is today's forecast and although the wind speed is considerably lighter it is still damaging and will be like this most of the time between now and Thursday.

Any time we see the black circles we know we're up for another blow.  Time for a hot drink  . . . 

. . . ahh, that's better.  A mug of freshly brewed, hot tea, the panacea to all that ails . . . 

I use social media. I enjoy it, but I have to admit my days on various platforms are now probably numbered because of AI.

In recent weeks I have encountered numerous problems on different platforms. The first time anything started showing up was on Instagram. Every time I logged into my account, I would get a pop up saying that suspicious activity was detected on my account. There was no suspicious activity. It was me. I have two separate accounts and from time to time I log out of one and into the other. Then I switch back. Unfortunately, if I do this too frequently, Instagram logs it as suspicious activity. This has also happened to a few of my friends, several of whom have lost their Instagram accounts. Some have been fortunate and able to reclaim them. Others not so.

One day I was on Facebook, and all of a sudden up pops a message informing me that my latest post has been deleted because it is obvious that it is written by a spam bot.  SPAMBOT!!!! Moi?!  Trust me, the irony of being told by AI that it has identified me as a spambot was not lost on me.  This went on for weeks with me sending screaming messages to FB but in reality I was wasting my time as there was only an AI on the other end not a real person.  Eventually, it let up, until . . . .

 . . . last week on the site I share photos to for publication in the local paper suddenly refused to share my submissions on the FB page.   I contacted the page admins immediately and they didn't even know I had submitted anything much less had it declined!  FB and AI were making the decision for them.  I am getting too old for this malarkey.

Mind, I've not had anything picked for weeks now.  Not that it matters, au contraries, but all the photos being selected now {there's a new person in charge} are heavily post edited, something I am not into doing on my photos.  I don't object to removing blemishes or telegraph poles but do draw the line at changing colours, for example.

Well, that's it for now. I've just discovered I haven't got water. I guess I'd better phone Dwr Cymru to see what they have to say.  We've been having a lot of time where there's been low water pressure recently, but it isn't often we are without water completely as we are now.

until next time, stay safe.

Debbie.

Dydd Santes Dwynwen Hapus

Hello Friends!

Dydd Santes Dwynwen Hapus

Today is Dydd Santes Dwynwen which is celebrated annually in Wales on January 25th.  Her story, drawn from the mists of time that veil myth and folklore, is often equated as a Welsh Valentine’s Day.

Dwynwen was a 5th century Welsh noblewoman, the fairest and most beautiful of all the twenty four daughters of King Brychan Brycheiniog. She fell in love with a prince named Maelon Dafodrill and he with her. They wished to marry, but her father doubted Maelon's integrity and, despite the heartfelt pleadings of both Dwynwen and Maelon, he forbade them to marry. Unable to disobey her father, and distraught by his disapproval, Dwynwen ran away into the forest and prayed to God for divine guidance to help her fall out of love with Maelon. She fell asleep on the forest floor and while asleep she was visited by an angel who gave her a potion to erase all memory of Maelon and to turn him into a block of ice. The angel then granted her three wishes.

For her first wish, Dwynwen asked that Maelon be thawed and life restored to him.

Her second wish was that God meet the hopes and dreams of all true lovers.

Her third wish was that she would never, herself, marry.

The three wishes were fulfilled and thereafter Dwynwen devoted the rest of her life to the service of God.

With her father's blessing, she left the court of Brycheiniog, and taking her elder brother Dyfnan and her sister Cain, crossed the sea in a small boat and eventually landed on a small island just off the coast of Anglesey. Here Dwynwen build a small cell of mud and wood, and over the years that followed many young women joined her and so founded a convent.

On the island is a sacred well {as so often happens in the ancient Welsh folk tales} sometimes depicted as a cauldron, and therein swims a sacred fish with the ability to predict the fortunes of couples. Another tradition says that if the water boils while you are present then good luck in love will follow.

At the end of a long life of devotion to God, Dwynwen lay on her bed and prayed for one last glimpse of the sea that had carried her to the island. Legend says that a large boulder blocking her view split asunder and she once more looked out on the ocean that had carried her here.

After her death, aged 80, in 465 A.D. the church became a place of pilgrimage. Dwynwen's belongings were placed in a chest known as Cyff Dwynwen and pilgrims would bring a white pebble and place it on the chest in memory of Dwynwen.  Later, money was donated and nearly one thousand years after her death it was used to build a small stone church on the site and was called Llanddwyn, or Church of Dwynwen, the ruins of which can still be seen today.

Dwynwen became the Welsh patron saint of lovers and, according to some, friendship. The most famous quote attributed to her is “nothing wins hearts like cheerfulness”. Over time she became  associated with healing of sick animals, a purpose for which she is still invoked today. 

Unlike St Valentine, there are no traditional ways to celebrate her day, but of late the commercial practice of card giving seems to be increasing in popularity, if only in Wales.  We do not have the hype and hoopla of Valentines Day on Dydd Santes Dwynwen, just a quiet and personal observance of a little known Welsh woman and I think that is a fitting way to celebrate her life.   However, we do have one other unique tradition to do with love and marriage and that is the Love Spoon.

The Welsh Love Spoon is the traditional symbol of engagement or betrothal was given by the young man to his future wife.  It is hand carved by the young man from a solid block of wood and is full of symbolism to his commitment.  For example:

A Bell: togetherness in harmony, marriage

A Ball in a Cage {difficult to carve from solid wood}: each ball represents the number of children he hopes to have

A Chain {difficult to carve from solid wood} the number of links relate to the number of children hoped for, or a symbol of togetherness

Cross: Faith in Christ or God

Heart: Love

Diamond: Wealth and Good Fortune

I hope you have remained safe during Storm Eowyn, who viscously unleashed her wrath across most of the British Isles yesterday, wrecking havoc and leaving mayhem in her wake.

Until next time

Debbie 

{pronounced Dwee~n~wen or Dweenwen}

Hen Galan and the Mari Llwyd

Hello Friends!

I am putting this up a day early to give you a chance to read it before tomorrow.

It seems that Pembrokeshire is becoming quite the place to celebrate Christmas and the New Year. According to Tripadvisor, St David's is one of the best places in the whole of the United Kingdom for Father Christmas to come and visit for we have some of the best proper working chimneys in the country, which means Father Christmas doesn't encounter problems over access as he does his parcel dropping rounds on Christmas Eve.

Several places in Pembrokeshire host New Year's Day charity swims, which attract many people to don their peculiar fancy dress swimming costumes and take a quick dip in the chilly sea to raise funds for different charities. Two particularly famous ones now are held in Saundersfoot and Tenby, with lots of smaller ones dotted around the coastline.

Fishguard is in the top 20 places in the United Kingdom to celebrate New Year's Eve with their mahoosive street party on the square.

And the celebrations don't stop until the middle of January when one small village celebrates Welsh New Year's Day, or as it is known, Hen Galan, on the thirteenth day of January.

Cwm Gwaun is a beautiful, picturesque, small valley to the east of Fishguard in north Pembrokeshire and they celebrate New Year's Day on January 13th, two weeks after everyone else.  They aren't two weeks late, they just celebrate on the old Julian calendar which was abolished in 1752 when it was replaced by the Gregorian calendar {still in use today}.  However, the people of Cwm Gwaun resisted the change which is why to this day the children of Cwm Gwaun get the day off school to go from door to door singing in exchange for sweets and money.

A traditional verse such as this is sung at each door:

Blwyddyn Newydd dda i chi / A happy new year to you

Ac i bawb sydd yn y tŷ / And to everyone in the house

Dyma fy nymuniad i / This is my wish

Blwyddyn Newydd dda i chi / A happy new year to you

Another seasonal tradition which occurs between Christmas and Twelfth Night is the Mari Llwyd or Grey Mare. A horse's skull on a pole is decorated with greenery and ribbons, and paraded around the village, this time by adults, going in and out of houses, accompanied by singers or wassailers who traditionally exchange "pwnco" or rude rhymes with the residents. If successful entry is gained, the household is guaranteed to have good luck in the coming year.

You can read a lot more about the history and possible origins of the Mari Llwyd HERE

Until next time
Debbie

photos from the archive of the National Museum of Wales